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Research  /  Policy analysis
Presented at NORD Breakthrough Summit 2026

Beyond Survivorship: What the Cancer Registries Amendment Act Cannot See

The cost of invisibility and the economic case for Cancer Thrivership
$7.35B
invested in cancer research by the National Cancer Institute in fiscal year 2026.
VS
0
required registry fields that track how patients live after first treatment.
Angela Valentine, presenting author · AO Healthcare Consulting; Health, Hope & Hip-Hop Foundation · Portland, Oregon Oya Gilbert, presenting co-author · Health, Hope & Hip-Hop Foundation · Wilmington, Delaware
Research poster titled Beyond Survivorship: What the Cancer Registries Amendment Act Cannot See, by Angela Valentine and Oya Gilbert, presented at the NORD Breakthrough Summit 2026. It argues that U.S. cancer registries have required the same core data since 1992, undercount blood cancers like MPNs and MDS, and do not track patients' quality of life, financial hardship, or experience over time.
Poster shown at screen resolution. Abstract AR005. © 2026 Health, Hope & Hip-Hop Foundation. Request the full poster
Cancer Thrivership
noun · the standard this analysis proposes
Sustained quality of life and well-being beyond survival. Thrivership is not a fixed endpoint but an evolving standard that begins with visibility. A system cannot support people living well with a disease it does not first name, count, and report equitably. It advances as visibility does: first every cancer counted, then every community reached, then how patients actually live.
What the law asks registries to collect

1 law. 3 systems. Core fields unchanged since 1992.

CDC's NPCR, NCI's SEER, and the American College of Surgeons' National Cancer Database track U.S. cancer. Their federal mandate is the Cancer Registries Amendment Act of 1992.

Required by law

Pub. L. 102-515 · 106 Stat. 3372
  • Who was diagnosed
  • Which cancer
  • How far it spread
  • How it was first treated

Never required

Not in any amendment, 1992–2026
  • Quality of life over time
  • Symptoms and daily function
  • Financial toll
  • Patient-reported experience

Funding, guidelines, and coverage decisions rest on data built for acute disease. MPNs weren't even reportable to U.S. registries until 2001, and they remain undercounted.

Key findings

It counts diagnoses, not lives

The 1992 Act works exactly as designed. It can tell us who survives, but never how they live, and it doesn't count every cancer equally.

1

The core fields haven't changed in 34 years

Since 1992, the law has required diagnosis, extent, and first treatment, and nothing that follows. Later laws expanded who is tracked, not what is collected.

Pub. L. 102-515 · 1992 → 2026
2

Not all cancers are counted equally

MPNs and MDS weren't reportable until 2001. These cancers are mostly diagnosed in outpatient clinics, but registries rely on hospital reporting, and SEER may underreport myeloid leukemias by 50–70%.

Only 4% of reported MDS cases came from physicians' offices
3

The gap falls hardest on the underrepresented

In AACR Project GENIE, Black patients appear at half their expected share and Hispanic patients at just over half. Native American patients are absent from five cancer types entirely.

Observed-to-expected: 0.50 · 0.57 (p<0.001)
4

Invisibility carries a direct cost

Nearly half of cancer survivors report cancer-related financial hardship. This is known only because of a one-time survey linked to SEER data.

Medicare vs. private insurance: aOR 1.43
5

Patient-reported data works

In the COMFORT-I trial, myelofibrosis patients on ruxolitinib reported at least 50% symptom improvement far more often than those on placebo. That evidence helped support FDA approval in 2011.

45.9% vs. 5.3% at 24 weeks (p<0.001)
6

It is buildable

The ICGG Gaucher Registry grew from 16 patients in 1991 to more than 6,000 across 62 countries, with 54,000 patient-years of follow-up by 2011.

16 → 6,000+ patients · 62 countries
The cost of invisibility

What goes uncounted

Equity

What isn't counted can't be corrected. Every biomarker, trial design, and guideline built on surveillance data carries its blind spots forward, so the communities with the worst outcomes get the least evidence written about them.

Patients

No required field records out-of-pocket costs, employment, or quality of life after first treatment. For people living decades with a chronic blood cancer, the years that matter most go unrecorded.

The system

The national estimate of cancer care costs, $183 billion in 2015 and projected to reach $246 billion by 2030, counts medical spending only. Lost wages and caregiving fall outside the count.

The proof

SEER-MHOS has linked registry data to quality-of-life surveys since 1998, but only for Medicare Advantage enrollees who happen to be surveyed. Voluntary linkages show it's buildable. Only a statutory field makes it universal.

The path forward

Congress has expanded registry law before. It can again.

Moving from survivorship to Thrivership is a legislative problem, not a scientific one. For 34 years, the law has stood still while its inequities were documented. No system is comprehensive while blood cancers, entire communities, and life after treatment go uncounted.

  1. Visibility: count every cancerRequire and support reporting from physician offices, outpatient hematology practices, and pathology labs, so cancers like MPNs and MDS are counted where they're actually diagnosed. Record disease progression, not just first diagnosis.
  2. Measurement: follow lives, not just diagnosesAmend the 1992 Act to add core longitudinal fields, supported by dedicated PCORI funding. Build on proven models like SEER-MHOS, and report every field by race and ethnicity.
  3. Accountability: make progress publicCongress amends the law, CDC and NCI implement it, and patients help govern it. Coalitions keep the pressure on through regular public reporting on who is counted, who is missing, and how patients are living.

Method: a structured narrative synthesis across four domains: federal surveillance systems, legislative history, health-equity literature, and economic-burden data. Sources were purposively selected, not systematically searched.

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Suggested citation

Valentine A, Gilbert O. Beyond Survivorship: What the Cancer Registries Amendment Act Cannot See. Poster presented at: NORD Breakthrough Summit; 2026. Abstract AR005.

References (17)
  1. National Cancer Institute. NCI Budget and Appropriations, FY2026. cancer.gov/about-nci/budget. Accessed October 2026.
  2. Cancer Registries Amendment Act, Pub L No. 102-515, 106 Stat 3372 (1992).
  3. Benign Brain Tumor Cancer Registries Amendment Act, Pub L No. 107-260, 116 Stat 1743 (2002).
  4. Firefighter Cancer Registry Act of 2018, Pub L No. 115-194, 132 Stat 1506.
  5. Rollison DE, Howlader N, Smith MT, et al. Epidemiology of myelodysplastic syndromes and chronic myeloproliferative disorders in the United States, 2001–2004, using data from the NAACCR and SEER programs. Blood. 2008;112(1):45-52. doi:10.1182/blood-2008-01-134858
  6. Craig BM, Rollison DE, List AF, Cogle CR. Underreporting of myeloid malignancies by United States cancer registries. Cancer Epidemiol Biomarkers Prev. 2012;21(3):474-481. doi:10.1158/1055-9965.EPI-11-1087
  7. Cheung ATM, Palapattu EL, Pompa IR, et al. Racial and ethnic disparities in a real-world precision oncology data registry. NPJ Precis Oncol. 2023;7(1):7. doi:10.1038/s41698-023-00351-6
  8. Dhir A, Stensland KD, Herrel LA, Sekar RR. Individual- and community-level risk factors of cancer-related financial hardship among cancer survivors. JAMA Netw Open. 2024;7(8):e2429286. doi:10.1001/jamanetworkopen.2024.29286
  9. Verstovsek S, Mesa RA, Gotlib J, et al. A double-blind, placebo-controlled trial of ruxolitinib for myelofibrosis. N Engl J Med. 2012;366(9):799-807. doi:10.1056/NEJMoa1110557
  10. Weinreb NJ, Kaplan P. The history and accomplishments of the ICGG Gaucher registry. Am J Hematol. 2015;90(suppl 1):S2-S5.
  11. Mistry PK, Belmatoug N, vom Dahl S, Giugliani R. Understanding the natural history of Gaucher disease. Am J Hematol. 2015;90(suppl 1):S6-S11.
  12. Weinreb NJ, vom Dahl S, Cappellini MD. Long-term data from the ICGG Gaucher registry: clinical parameters after 10 years of treatment with imiglucerase [abstract]. Blood. 2009;114(22):1390-1391.
  13. Weinreb NJ, Camelo JS Jr, Charrow J, et al. Gaucher disease type 1 patients from the ICGG Gaucher Registry sustain initial clinical improvements during twenty years of imiglucerase treatment. Mol Genet Metab. 2021;132(2):100-111. doi:10.1016/j.ymgme.2020.12.295
  14. Mariotto AB, Enewold L, Zhao J, Zeruto CA, Yabroff KR. Medical care costs associated with cancer survivorship in the United States. Cancer Epidemiol Biomarkers Prev. 2020;29(7):1304-1312. doi:10.1158/1055-9965.EPI-19-1534
  15. EveryLife Foundation for Rare Diseases; The Lewin Group. The National Economic Burden of Rare Disease Study. EveryLife Foundation; 2021.
  16. EveryLife Foundation for Rare Diseases; The Lewin Group. The Cost of Delayed Diagnosis in Rare Disease: A Health Economic Study. EveryLife Foundation; 2023.
  17. National Cancer Institute. SEER-Medicare Health Outcomes Survey (SEER-MHOS) Linked Data Resource. healthcaredelivery.cancer.gov/seer-mhos. Accessed October 2026.
Disclosures

The authors declare no conflicts of interest relevant to this work. No funding was received in support of this analysis. Views are the authors' own and do not represent official positions of AO Healthcare Consulting, LLC, or the Health, Hope & Hip-Hop Foundation.

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